About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Sunday, October 30, 2011

Yesterday it was rainy and miserable. So, the kids were stuck inside. And for some reason, Tom and I couldn't get it together to do anything. I was supposed to run 12 miles - but had NO interest in running in the cold rain. And I certainly had no interest in doing them on the treadmill at the gym. So, since yesterday was kinda a bust, we decided to get the kids out today for a bit. I ran a quick 5 miles on the treadmill (it was really cold this morning!). I was nice and warm running a measly 5 miles while many of my friends were running 26.2 miles in the freezing temps in DC for the Marine Corps Marathon. Yay them! Then we headed out.

Tom thought of Bass Pro Shops. It's huge - and there's a big fish tank, and a little "creek" with fish in it. There's stairs and a big stuffed bear and all kinds of things to look at. So, we thought we'd get them out walking a bit. We didn't take in the stroller - or the suction machine! WooHoo!!! Not carrying that thing around is a HUGE deal!!! It was in the car, close by, if we needed it.

I was the dork who took some pictures. Oh well, they will never see me again, right?

The waterfall goes into the fish tank.

I don't know what got into Harlie today, but she was more photogenic than usual.

One of the best photos of Harlie, ever!

The left side of her face has some nerve damage/paralysis from her Goldenhar Syndrome. But, I wonder if she's getting stronger. It really looks pretty good in these photos!

She's on a roll!

And I know I shouldn't make fun. But, I can't help myself!!! I don't care if you put some cute little bows and eyelet lace on it - it's still not going to be girly or cute.

Period.

And even though that whole zipper thing might be the latest fad...

I wouldn't carry that if you paid me. Okay, fine. I might for a million dollars. But that's the lowest I could go. I mean, a million dollars could buy a lot of speech therapy!

Okay, must take a break now. I have to go make some nachos and watch a bit of the Steelers vs. Patriots game. Go Steelers!

Just trying to get caught up... yes, her birthday was over a month ago.

Here are some photos from Harlie's 5th birthday party. We had it at The Little Gym because we could tailor it more to what Harlie was allowed to do physically, since her spinal fusion. We kinda didn't follow the rules, exactly, and let her hang from her arms a bit. I wanted to keep the party kinda small. And I wanted to promote some relationship building with her classmates. So, we invited all the girls from her class (most were able to come) and some friends that are about her age. Of course, the boys are Murphy and Cooper.

Can you believe how much shorter she is than everyone?

Aside from Peyton (in the yellow dress) and Cooper and Murphy, of course, all those kids are in kindergarten. And Peyton is three and she's taller than Harlie. Heck, Cooper is only two inches shorter than her. He is totally going to pass her. And that's going to be really weird. At the pool this summer I was asked if Harlie and Cooper were twins. Oh my sweet little girl.

This is the point when we just couldn't tell her no.

But look how happy she is! How could we deny her that on her own birthday?

Monkey see, monkey do...

Harlie signing "bubbles"...

Harlie's "cake."

This was the first time she's ever blown out her own candles!!! And I wasn't expecting it, so I didn't capture it on film. Darn it! She really did great! And those of us there that understood what just happened were like, "YAY HARLIE!!!" And I'm sure the kids were like, "What's the big deal? She just blew out her candles." Ahhh, it's the little things.

That PMV (the purple thing on her trach - it allows her to inhale through the trach, but then closes, which forces the air out of her mouth and nose. This allows air to go through the vocal chords, which is how you produce sound) has been AMAZING! We have been working so hard to get her to tolerate it for years and years. And it is finally paying off! She's actually quite loud now. And it allowed her to blow out her candles! And it makes her sneezes sound like the cutest thing you've ever heard! The first time I heard her sneeze while wearing it - I cried. It was the sweetest sound!

And speaking of her PMV, I heard from a representative from their company recently and she wants me to submit a little write up about Harlie and her PMV to be included under their Patient Stories section. YAY! I'm so honored! So, she sent Harlie a little package this week and this is what Harlie did for the first time (thanks to the PMV)....

Thank you so much, Julie! I am so grateful for a product like this! Yet I have a love/hate relationship with the trach. Weird.

Sunday, October 23, 2011

I have a lot to tell you about, but for tonight, I want to ask you to keep Beverley and Jim and their family in your thoughts and prayers as they lost their sweet Leyda yesterday (Saturday). She was six years old.

My heart aches for them. Here is what Beverley wrote that day:

Our bodies now disappoint us, but when they are raised, they will be full of glory. They are weak now, but when they are raised, they will be full of power.~1 Corinthians 15:43Leyda is now with Jesus, full of glory and full of power! Her heart is healed, her body is healed.

Wednesday, October 19, 2011

I'm feeling overwhelmed tonight. There are so many balls in the air concerning Harlie right now. She has been a full-time job requiring over-time lately! And I can totally see that other important things in life are suffering because of it. I am really hoping I can get some things put to bed soon, so all can balance out again (as if!).

First of all, we can't seem to get her healthy and off antibiotics!

During the last two weeks of August, she started to have some issues. I can't even remember now (it was so long ago, after all!) but her pediatrician put her on Amoxicillin for 10 days. Just a few days later, all her symptoms reappeared. So, back on it she went for 14 days.

Then a week or so after that course was done, she started to get sick again. We were starting to wonder if she had a sinus infection. But, she saw her local ENT that week and she said she appeared to be fine. Although that was the day that she pulled that blood clot out of her ear canal.

A week later, she had an ear infection. And then went on her third round of antibiotics. But this time, he put her on Augmentin.

The day after her last dose of Augmentin, she saw the ENT in Norfolk, who said she had fluid in her ear and to watch it closely.

Two days later, she had a fever and was looking like crap. Again. So, back to the doc, and she had another ear infection - this time she had a blister in there. Another round of antibiotics, this time Omnicef.

Two days after that, she started showing signs of a UTI (urinary tract infection). Back to the doc. The dip was clean (which was very surprising) but they sent it away for culture just to make sure. And he put her on another antibiotic (Bactrim) for that since Omnicef doesn't cover UTIs. And then I went to Whole Foods and got her a probiotic just in case all the antibiotics do damage in other areas.

Whew!

The good news is that she had a fever (okay, several over a few days). She hasn't had a fever in years (even when her jaw or spine was infected post op). And that was making me quite nervous. So, I'm relieved that things seem to be working the way they are supposed to in that department.

Hopefully, this is it for her and antibiotics. And hopefully she can get back to school again. She hasn't gone since last Thursday.

She had an appointment with her pulmonologist today. We haven't seen him in over a year. She seems to be breathing more rapidly and more shallow lately. And I had some other things I wanted to discuss with them. Nutritionally she's doing well. He said that her weight for height number is great - it's actually higher than they would expect given her history (she's in the 25th percentile). Her height is still low - she's in the 3rd percentile for stature. Not surprising, really, considering she's two inches taller than Cooper. It won't be long before he's bigger than she is. Won't that be confusing!

One of my concerns was the sand table in Harlie's class. The last time I was there I noticed that there is a huge fine sand dust that floats around the room when kids are playing in the sand. It totally made me a nervous wreck. She has no filter - thus, no protection from the sand getting into her lungs. I asked him if I was crazy (hoping I was considering she LOVES the sand table) but he said no. The sand dust has to go. She simply cannot be around it. It would be different if she was only around it once a month or something. But, five days a week? No way.

I just hope that the school switches the sand out for another alternative. Anyone have any suggestions? I know that dried beans are a substitute. But, I'm not sure about bugs. I need to go and look for a small smooth pebble-like gravel material to see if that might be an option. If you know of any other options - please let me know!

I'm also working on getting a second opinion on her jaw. But that is way too long of a story to tell you about now.

Oh, and our pharmacy is having trouble getting two of her monthly meds. So, I guess I need to work on that, too.

Sunday, October 16, 2011

Tonight I want to tell you about Leyda...

She was born with Hypoplastic Left Heart Syndrome (her left ventricle was too small to pump the blood to her body) and she's had three open heart surgeries and has had two strokes. She's six years old and her heart is failing.

I just can't stop thinking about her and her Mom and Dad (Beverley and Jim). My heart aches for them. They are amazing parents who have done a wonderful job of making this little girl feel happy and loved. I can only imagine how painful this must be for them.

Ever since Harlie's birth, my eyes have been opened to a new world. I've met so many wonderful people. And too many of them have lost their children. I feel that it's my duty to never take my children for granted. I owe it to them. And I think of them when I'm having a hard time with my own kids. Or when I'm feeling particularly sad about Harlie and her struggles. I remember them. And I am grateful.

On Saturday I ran 12 miles and felt that old, horrible, familiar IT band pain in my right knee. (Not sure how that's going to affect my marathon aspirations.) When I got home, I was tired and sore. I needed to eat, ice my knee and take a shower. But, Harlie went into the playroom and got down the Chutes and Ladders game and brought it into the kitchen. She's not been feeling well the last few days (another ear infection) so it was good to see her want to play. But, I had things to do, and I didn't want to play.

Then I remembered Leyda. And Beverley and Jim. So, I sat down and played Chutes and Ladders with Harlie.

Things could have been different for Harlie. Things could have been worse. And things can always get worse. I will always remember that. And so I am grateful. And being grateful is a good thing.

Thursday, October 13, 2011

Sometime in the last few days Murphy stepped on a lego (a constant hazard around here) and cut the bottom of his foot. Tom washed it and put a bandaid on it, and I forgot all about it. Until Monday night, when Murphy started complaining about it (or Tom saw some drainage on his sock, or something. I know, ewwww, right?) So, we took a look and said, "Hello, Infection!" There was pus (such a yucky word), his foot was swollen and there was a red line creeping up his foot starting at the site. Ugh. Of course, he didn't have school on Monday and I took them to the mall to play - but did he say anything then - like when the doctor's office was open? No.

So we are supposed to leave the house at 9am the next morning, and I have no idea when we'll be back. I didn't think he could go another whole day without antibiotics. So, as soon as the office opened (8:30) Tuesday morning, I called his doc's office and they said to bring him in asap and they would take him and get him back out the door to try to help accommodate our schedule. They are so awesome.

Tom left and went to get Murphy from school while I stayed home to feed Harlie and pack the car. Despite our major efforts, by the time we put gas in the car and dropped the prescription off at the pharmacy, it was 9:30 by the time we were on the road.

More than an hour later (we were in Newport News by then) I switched out a movie for Harlie. And in doing so, I noticed that the floor looked pretty bare. Then I asked, "Where's Harlie's suction machine?"

Holy Crap.

WE LEFT HARLIE'S SUCTION MACHINE AT HOME!!!!

As the magnitude of this error sunk in, Tom started being funny (our go-to plan for very stressful times). And then I laughed and cried at the same time. Oh, so many emotions! We thought about our last thoughts as we were leaving the house. Tom said, "Don't forget your Diet Coke!" Thank God we remembered that! Whew!

And then I remembered plugging it in to charge because somehow we forgot to do that the night before. So, I plugged it in until it was time to go. While I was loading the car I thought about putting it in the car then, but then thought, "no, what if we need it before we get in the car?" I didn't want it to be in the driveway while I was in the house because that was too far.

That freaking suction machine has been at Harlie's side every minute of her life (practically) since the day she first left the hospital.

What if she had a plug? Well, she's certainly had them - but they've not been emergent so far. But I know our luck. The day we don't have the suction machine IS the day we're going to need it. Like really need it. And since it helps keep her airway open - the thought that I don't have it around is not a good one.

We were WAY too far to turn around. And she has a much stronger cough now. And we didn't have a choice. We were just going to have to be without it and hope for the best. I thought if I make it to old age, it'll be a miracle.

So, we get to the hospital and see an ENT first. He said that Harlie's ear is full of fluid, her eardrum is retracted (meaning pressure!) and of course, it's all scarred (nothing new there). Dang it! But, it's not infected. Of course she just had her last dose of antibiotics the night before. So, who knows what will happen now. So, to her - it sounds like she's underwater. Which would explain why we haven't seen an improvement since the blood clot came out a few weeks ago. Which reminds me, I don't think I ever told you about that. Ugh.

Okay - real quick... you might remember in this post I talked about how the pediatrician looked in Harlie's ear and then it started bleeding? It bled off and on for several days. Then a few days later she started pointing to her ear and signing "broken" which she does when the hearing aid battery has died. But, the aid was working fine. So, clearly something was amiss. I called her local ENT and they worked us in. The doc pulled out a HUGE blood clot that was blocking over 80% of her canal. No wonder she couldn't hear! And that's been in there everyday since before school started!

We thought for sure we'd see a turnaround in her listening and participation at school. But, after a few days, it seemed to get even worse! So, the fluid that's in there now would explain that. The ENT that we just saw yesterday said that if it doesn't clear up in two weeks, we should get her another tube. Ugh. It looks like I should really look into a bone anchored hearing aid (BAHA) for her. At least that would give us some back up that wouldn't be affected by fluid or blood, or whatever.

After we saw the ENT, her plastic surgeon came in. We spent more time with him yesterday than we ever have. He looked at her CT scan. I need to figure out how to get a photo of some of the images so I can show you. Her jaw is crazy. Unfortunately, my Mac computer won't read the disc. I'll see if Tom can work on it for me.

Anyway, he talked about what he needed to do. Her ramus is in a horizontal position instead of vertical, like in this picture:

And she's missing the condyle on her right. And I think there's something wrong with the coronoid process, but don't quote me on that.

It's really hard to picture the ramus in a horizontal position. But, her jaw looks nothing like that picture. She has no angle at all, really. But he said he could add one in when she's older. Oh goody, more surgeries! And her bottom teeth are way off from her top teeth. Although you don't need a CT scan to see that! And clearly, the two sides of her jaw are completely different. Her last reconstruction was done in December 2009. The bone graft on the left side took just fine. But the one on the right got infected and had to be removed. This left her jaw even more asymmetrical than before.

Basically, he's going to have to cut up her jaw into several pieces and then put them back together again in a better way. If you've ever had any kind of dental work done at all - I'm sure you can only imagine the pain when recovering from this kind of surgery. It is truly horrifying.

The good news is that he thinks she has more bone to work with this time around. I guess the bone has gotten thicker as she's gotten older. So, hopefully that will help a lot. And he feels confident he can make the changes necessary for this surgery to be successful. But, we've thought that each time and here we are.

The bad news is that plastic surgeons (especially reconstructive for anatomy defects) are like artists. Each patient is completely different. The results vary widely and cannot always be predicted. And since her structure is abnormal to begin with, it makes it almost impossible to know what to expect. All these are my words by the way - not his. It's just my take on it after all these years.

And he said that with Goldenhar Syndrome, not only is the bony structure affected - but so is the soft tissue. And if the soft tissue won't stretch or accommodate the changes made to the bony structure, then the results might not be favorable. The soft tissue can actually force the bone to retract or move by the constant pressure. Which is why it takes a year to know if the surgery was successful. The agony!

He said that he could do the surgery whenever we are comfortable.

After talking it through, we decided that we would shoot for May, 2012. Since her jaw has to be wired shut for 9 weeks, if we waited till after school let out for the summer, we would run a huge risk of her not being able to start school again in the fall. Since she's had 2 out of 3 bone grafts get infected and require additional hospital time, we would rather be safe than sorry. And Tom was thinking that it would be better for her to miss the last month of her first time through kindergarten, than miss her first month of real kindergarten.

So, if we are lucky, and all goes the way we want it to, we would be hoping for decannulation (getting the trach out) sometime in the summer of 2013. So, she would be 7 and starting the first grade (assuming she does kindergarten twice, and is able to progress to first grade).

It's really overwhelming to think she'll be almost 7 and still be trached. I had no idea it would be like this. And what if this surgery isn't successful? I can't even think about it.

Which brings me to my struggle with this whole mess. I was thinking that we should get some other opinions. I just thought that we owe it to Harlie and to ourselves to make sure that we are making the best decision on this. So, I spoke with her ENT in DC about it several months ago. He gave me the name of a surgeon in Jacksonville, Florida. I e-mailed him today. And he replied, and in his reply he "strongly recommended" that I reach out to another surgeon in Miami.

And his recommendation got me thinking that I could probably reach out to a dozen plastic surgeons and that I would still be in the same situation. How will I know who's the right one? So, thinking things through....

1. If I went to a different surgeon, they would be going into her jaw with no prior experience as to what worked or didn't work in the two previous surgeries.

2. I do believe that no matter who performs the surgery - the same issues are present (the question about the soft tissue, bone grafts, results, etc.).

3. I have to have a facility that has a cardiac anesthesiologist and can support her cardiac issues (or at least get her to DC if needed).

4. If we travel far away for surgery (like Miami or Boston) how do we do the follow up appointments? And what if she gets another infection like before? What if time is of the essence???

5. I've already seen two other plastic surgeons (in addition to her current one) and neither of them were candidates to perform surgery, in my opinion. Both of them only perform jaw distraction - not jaw reconstruction. Her current surgeon does both procedures. And it is very clear from her CT scan that jaw distraction is NOT an option for her. Period. Her jaw needs WAY more than just lengthening. It needs full reconstruction. That's just the way it is. And both of those surgeons were trying to tell me that distraction can be done in almost every case. Whatever. I just don't believe that. And to be fair, they had not seen her CT scan when they said that. But, the fact that they would say that without seeing her CT scan is concerning, if you ask me.

6. I am very comfortable with this surgeon. I think he's a great person, as well as a surgeon. But, there is a part of me that says we have ONE more shot to get this right. It HAS to work this time. But are more opinions going to help or confuse? I don't know. But I do know that the thought of something going wrong and having to travel great distances to see her surgeon is VERY SCARY (considering how awful our last experience was, which lead to this).

If this surgery is successful, our lives will change dramatically. Without the trach, Harlie could learn to speak at a much faster pace. Her voice would be stronger. And she would be able to make sound with a lot less effort - which would greatly speed up the process.

Eating could be a lot easier. I have to say that after seeing her CT scan - I have to wonder how much the alignment of her teeth affects her ability/desire to eat by mouth. Her bottom teeth fall to the right and are no where near lining up with her top teeth. So, as I sit here and make my jaw go to the right and then try to swallow, it's damn near impossible! Try it. I don't know how in the world she does it!!! And now I feel like a total horrible mother for making her!

And forget chewing!!! When is she going to be able to learn to chew??? I really don't see how chewing is going to be an option at all - until her teeth line up somewhat. And the thought of going more and more years with no chewing makes me want to barf. Can you imagine the impact of that socially? Not to mention YEARS and YEARS of more pureeing food for her!!! Oh brother. I have to stop thinking about that. For real.

So, I guess you could say I have a lot on my mind. As much as I want this surgery to happen, I dread it. The thought of her waking up afterwards and looking me with that look. The look that says, "What did you let them do to me???" I just have to hope that the next seven months will provide some growth in maturity and focus to allow us to try to talk to her about it so she'll know what's happening. Or at least know more than she usually does before a surgery.

It makes my heart hurt to know what lies ahead of her. Until then, we'll laugh as much as possible.

Oh, and just in case you were wondering, we did just fine without the suction machine. We didn't need to use it once. And what a difference it's absence made to our load when walking around the hospital! And all those times I take it into the grocery store, or Target or wherever? Maybe we can lighten our load a wee bit? I think if it's in the car and we can get to it quickly if needed, it would be fine to not carry it all the time.

Well, that's it. It's super late and this post is super long. As always, thanks for reading!
~Christy

Tuesday, October 11, 2011

It's 4am and I can't sleep because I feel like crap. I have a cold. I like to consider myself more strong than weak, but colds kick my butt. I'm thinking it's worse when I'm training for a marathon. I'm tired from that already, so I don't have much left over to fight a sickness.

I felt a tinge of something Friday night. On Saturday morning I woke up, met the group, and ran 18 miles. Overall, I felt pretty good. The course was hillier than I would have liked (but aren't they all?). Then we went and got some breakfast. Then I came home and weeded and planted the flower bed around the mailbox. And that hurt. My legs were screaming by then.

That night we went for a walk around the neighborhood with the kids. I don't know why we don't do that more often. The kids love it and it wears them out. A win/win! Harlie even wanted to walk more than usual. We are trying to work on her walking endurance (we just started physical therapy again finally!). And when we got the kids to bed and I sat down, it (the cold) hit me.

I have no energy to do anything. And all I can think about is how much I'm not getting done or doing that I need to do. How in the world am I going to get miles in this week? Luckily, it's a recovery week, so we'll run only 12 miles on Saturday. So, really, of all times to get sick, this is the best time. This coming Saturday is 12 miles, the following is our longest before the marathon - 20 miles. Then two weeks of tapering miles. Then on November 12th, the marathon - all 26.2 miles of it. Kinda hard to think about, really.

So, I think this will be my last marathon for a while. I've already decided I'm not going to do it again next year. This week alone is a perfect example of why running a marathon is too much for me. For one, I'm sick. Two, we have an appointment in Norfolk today to see Harlie's plastic surgeon. Funny story... I told my night nurse that we were going to see Harlie's plastic surgeon tomorrow and she asked me what for, eye, ear? Ha! It's pretty comical that I have to be more specific when I say plastic surgeon. And no, not eye or ear... jaw. I hope Harlie has my sense of humor...

Anyway, so we'll be gone the whole day to go to Norfolk (and she'll miss school, of course). And I can't do my long mid-week runs on Wednesdays because I'll be gone too long and will be too far from the gym to leave Cooper there while I run. I think I have to run 9 this week. Which means I'll have to do them on Thursday, rest Friday, run Saturday. According to our training schedule, we're supposed to run four days a week. I've already cut that back to three days. And this week, I'll only run twice, and that includes my long run. And that's if I can, considering this cold.

I'm over the pressure of having to get these runs in. Five months of that is too much for me now. And it would be different if I thought that running like this gave me more energy. But the fact of the matter is that once you get up into this kind of mileage, the training drains my energy and I have very little left for Tom and the kids. So, I just need to hang on for five more weeks. And then it will be over.

Another reason I couldn't sleep is because I saw something on a signing website that's bothering me. The website said that the term "hearing impaired" is considered offensive to the deaf and hard of hearing community. And that they prefer those terms - deaf and/or hard of hearing - instead.

Personally, I've always used the term hearing impaired. And it sounds like that's what our county uses because they call it the hearing impaired program and Harlie has a hearing impaired teacher. And I feel like it accurately describes her hearing loss. Here is the definition for impaired:

1. Diminished, damaged, or weakened: an impaired sense of smell.

2. Functioning poorly or incompetently: a driver so tired as to be impaired.

3. Having a physical or mental disability: an impaired child in need of special assistance.

n.(used with a pl. verb)

People who have a physical or mental disability considered as a group: a swimming class for the physically impaired.

So, what's the problem? I see nothing offensive in that definition. Maybe I'm desensitized because Harlie has so many issues with so many different body parts and functions. I don't know. But, I don't get it.

I was so bothered by it, that after I initially tried to go to sleep, I got back up to google why the term hearing impaired was offensive. And here is what I found:

Hearing-impaired – This term was at one time preferred, largely because it was viewed as politically correct. To declare oneself or another person as deaf or blind, for example, was considered somewhat bold, rude, or impolite. At that time, it was thought better to use the word “impaired” along with “visually,” “hearing,” “mobility,” and so on. “Hearing-impaired” was a well-meaning term that is not accepted or used by many deaf and hard of hearing people.

For many people, the words “deaf” and “hard of hearing” are not negative. Instead, the term “hearing-impaired” is viewed as negative. The term focuses on what people can’t do. It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged. It implies that something is not as it should be and ought to be fixed if possible. To be fair, this is probably not what people intended to convey by the term “hearing impaired.”

Every individual is unique, but there is one thing we all have in common: we all want to be treated with respect. To the best of our own unique abilities, we have families, friends, communities, and lives that are just as fulfilling as anyone else. We may be different, but we are not less.

I just don't get it. This is the part that stands out most for me.

It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged. It implies that something is not as it should be and ought to be fixed if possible.

Who put the "standard" part in there? Who says hearing is standard, and not hearing means substandard? That's negative. Not the use of the word impaired. And her heart doesn't function like it should. Should we not have fixed that? And no, her hearing isn't as it should be because your ears are made for hearing. And she's missing an entire ear and the other one is damaged, diminished or weakened. There. I said it. And to try to fix that, we got her a hearing aid. And we're going to get her a BAHA if that helps her hear better, too!

In another paragraph, it read that the term "hearing loss" isn't liked either because for people born deaf, they never had hearing, so they didn't lose it.

Look, let's face it. Harlie was born with many birth defects. I suppose the word defect is probably offensive, too. The list of offensive terms is getting ridiculous. Other words that offend some people are special (when referring to children and their needs), and normal (what's normal, after all?). I'm not bothered by any of them.

Harlie is special. Her body functions differently than the norm, differently than it is supposed to. And she has special needs - a nurse and a tube in her throat in order to breathe.

I'm getting off subject. Before Harlie, I had never met a person who was deaf, or hard of hearing. Which, by the way, I don't like "hard of hearing". To me, that sounds like a volume issue. Anyway, since Harlie, of course, I've met some signing people (all hearing) and I had the pleasure of meeting a deaf couple this summer. I signed a little - an interpreter was there and she introduced us. I was so proud of the signs that I knew. And I was so proud that out of all the people that were there, I was one who knew some signs. Then I heard that there is a sign for "stupid hearing people". Now that's offensive. But, okay, fine. I felt pretty darn stupid when I was trying to sign with that couple. But I would have felt the same kind of stupid if I were trying to talk to someone who speaks spanish. I don't know that language, either. Doesn't mean I'm not capable of learning, though. But, whatever.

I think what bothers me most is that I've been using a term for years - one that I am completely comfortable with - that's considered offensive by a whole community. I don't want to offend anyone. But I feel this need to help other people understand Harlie's issues. And I feel that hearing impaired accurately describes her hearing loss. And it is a loss. I don't care if she was born that way or not. And her life is more difficult because of that loss. Trust me. I have seen her struggle in class. The loss of normal hearing is having a profound impact on what and how she learns and how she acts.

And what kind of mother would I be if I didn't try to do everything in my power to help her??? I keep going back to that sentence - It implies that something is not as it should be and ought to be fixed if possible.

Her heart.
Her jaw.
Her right lung.
Her butt.
Her spine.
Her inability to eat.
And her hearing.

All things that are not as they should be and ought to be fixed if possible.

She is not substandard. And she is not less of a person because of her losses. I don't see how anyone could think those things - about anyone. And I don't see how the term hearing impaired implies any of those things at all.

So, now I'm left wondering what I do from here? Do I continue to use a term that's known as offensive to people that I don't even know? Or do I start using Hard of Hearing (which I don't like)? And frankly, I'm pissed that I even have to think about this. Like I don't have enough of my mind! Sadly, it seems that a website that is meant to offer support, only added to my stress and worries. I'm sticking with what I'm comfortable with for now. Harlie is hearing impaired and I think she is an extraordinary little girl.

Wednesday, October 5, 2011

I took pictures of all the pages of Harlie's book. It is soft-bound and it has really done wonders. I have received nothing but positive feedback from all the parents I've met so far, and teachers. Each one of Harlie's classmates received their own book. Then they passed one around to each kindergarten class. And they put one in the library, too. The teachers that I've spoken to so far have said they really enjoyed it and I really think it has made a huge impact on the way Harlie has been treated so far. The kids have really been good to her and we are so, so thankful!!!

So, here it is (click on the picture to see it up close)...

I have to give the most credit to Cheryl Sale. She actually wrote it - when I give information about Harlie, I tend to be a bit too medical. But she really made it understandable for kids. I had to fight the urge to say "She's been through 20+ surgeries and over a year of hospital stays - JUST HAVE A HEART WILL YA?!"

This book has been an awesome tool, so far. And I highly recommend something like it for any kid who has some challenges.

Overall, I think kindergarten is great for her. There are some challenges - for her and for me. I never realized how often food is used as a motivator and/or reward for work. I guess that probably contributed to the two full years it took to potty train her! No M&Ms for her - just praise. And the food rewards are just constant reminders of something that's different and difficult about her. I hope that in time, the constant food around her and the excitement from the kids about getting food will make a positive impact on her.

Kindergarten is hard on me emotionally. She is VERY tiny. She's a good six inches shorter than everyone else in her class (or in the entire grade for that matter). She is VERY slow - physically, I mean. If the kids behind her in line don't pass her - there is a huge gap in the line. And it's not just that she's slow. She doesn't move the same way. Her movements are slower and not as confident.

The other day she was waiting to go to the potty. But when one kid would come out, by the time she got to her feet another kid would run right in front of her and go in. I was with her that day because we didn't have a nurse. It's just hard for a mom to see stuff like that. And if she could talk - she would say, "hey, it's MY turn" which, she can say with her device but by the time she hit the buttons, they would already be in there and they wouldn't hear the deivce anyway.

They were working on patterns the other day using Goldfish - Cheddar and Pretzel ones. The class chanted, "Cheddar, Cheddar, Pretzel" and Harlie didn't, of course. I showed her the buttons on the device, but you have to press three buttons to say cheddar or pretzel. So, she wouldn't be able to keep up with them anyway.

And I guess it's because of her hearing impairment??? But she really doesn't pay attention. She won't maintain eye contact when learning something new - especially if it's not something she's interested in. I was told that when a young hearing impaired (HI) child listens to someone talk - if they miss one word of the sentence, they don't understand the whole sentence. You need to have a good base of vocabulary in order to fill in the blanks. And a young HI child doesn't have that language base yet. So, imagine how easy it would be to lose interest when you don't understand most of what's being said.

I can't help but wonder if she might be ADD, too, since I've heard that siblings of a child with ADD are like 80% more likely to be ADD, too. Or something like that. God help us if she's ADD and needs meds for it - because eating is already a GIGANTIC challenge with her. Add the appetite suppressant medication to the situation and I might just give up for real!

Homework is challenging, too. She loses interest very fast. Last night we worked on naming five things she can hear. I know she can hear the telephone ringing, because when it does she signs and says, "telephone!" But, even after we went through a few things, I have NO idea if she understood what we were doing. She certainly didn't offer up anything she could hear.

It is both frustrating and worrisome. I know she's smart. I know she figures things out and remembers really well - but if she doesn't cooperate and show us (and her educators), what's going to happen to her???

But, this is partly why we put her in kindergarten this year. Hopefully a run through once, and another year of maturity and knowledge, will greatly improve her attention span and willingness to cooperate when it comes to the "work" of school.

The best thing about kindergarten so far is her ability to socialize with her peers. A couple of weeks ago I took her to see her local ENT for an ear issue (another blog post, I hope!). While we were in the waiting room, another girl came in and Harlie tapped her on the shoulder and waved and said "Hi!" I almost burst into tears right there! That is the FIRST time she's ever initiated contact with a child she didn't know. Before school, she would have just turned around and ignored her. I was so happy! What a positive impact kindergarten has had on her already!!!

Okay, I have to run. I really hope I'll update soon. I still have so much to share!!!
Thanks,
Christy

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